Have you had a reaction even though you\'re SUPER careful?

22 replies [Last post]
By Adele on Wed, 08-09-06, 00:14

After living with PA for 18 months, I'm feeling pretty good about my comfort zone. I know what I can and can't eat - and I don't really take risks.

There's a current thread about a Turkish chocolate with undeclared peanut protein. I read it and thought, 'there's no way on God's green earth I would eat that chocolate anyway! I only eat stuff I KNOW is safe'. I would never eat imported chocolate - the only chcolate I eat is Hershey's.

When I've read of adults dying from PA, I notice it's generally from eating things that I consider risky and wouldn't eat.

I'm guessing if I have a major reaction it will either be from a restaurant or mislabeled food - but I don't see how else it could happen.

How about you? Have you had a reaction (s) in SPITE of being super careful? Am I getting too cocky thinking I WON'T have a reaction because I'm too careful?

[This message has been edited by Adele (edited August 08, 2006).]

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By Corvallis Mom on Wed, 08-09-06, 02:59

I know that for my daughter, the answer will always be [i]YES[/i].

In other words, I can envision any number of scenarios whereby she ingests/has an internal exposure to 25-100 mg of pn protein. I also know that this is plenty to cause anaphylaxis for her.

After all, this is what you could pick up from a seat back at a movie theater... from a letter in a mailbox... from a waitress who forgets to wash her hands when she picks up your plate. Think of all the places that your hands share public space with others'.

Now all that is needed is to rub your eye, or touch your mouth or that straw you are going to drink from.

We've seen reactions like this many many times-- and we are [i]sooooooo[/i] careful.

On the bright side, we all practically [i]never[/i] get sick because of our handwashing rules and discipline regarding touching our faces. [img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img]

But this is why you [i]ALWAYS[/i] have epinephrine and a cell phone- right?

But no, I don't think you are "cocky" at all. A cocky person wouldn't have asked.

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By krasota on Wed, 08-09-06, 18:01

I've not have reactions from peanuts, but I've had reactions from soy, papaya, wheat, and latex despite my vigilance. And yes, I required epinephrine.

I'll be happy when (and I say when, not if) full disclosure is required with labelling. I'll also be happy when the soybean rust becomes so prevalent and resistant to every treatment that soy is no longer a major cash crop. [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img]

ygg

__________________

[b]?You open Your hand and satisfy the desire of every living thing.?[/b]

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By VariegatedRB on Thu, 08-10-06, 02:54

Well... I haven't had any MAJOR reactions. Lip swelling was my worst. And I have had some minor exposures but no reactions for a few years. I do understand though that that can change. I am PA, TNA, and Soy, as well as a few other things, but the lipswelling has only been from the PA.

I do not touch my food/face without washing my hands. I do not eat may contains or products I am not sure about. I eat at only a few restaurants that I have checked out thoroughly.

The other night, though, a little while after going to bed, my lip started throbbing, swelled, and had a small hive on it. It went away within an hour with no treatment.

I have no idea what it was from. I had eaten some Annie's mac and cheese. It was the first day I had ever eaten it, but had no symptoms after my first bowl earlier in the day, so don't think it was that... and brushed my teeth, but the same brush and paste I always use...

Maybe a bug landed on me and bit it and I didn't notice! Who knows?!? But it made me think...

But I believe like you- if I am vigilant, it is unlikely I will have an extreme reaction.

I think that is less true for people who have reacted to small exposures.

Tara P

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Tara P

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By LisaM on Thu, 08-10-06, 02:57

I've had *plenty* of reactions but, thankfully, very few full-blown anaphylactic reactions. (I've had a lot of reactions involving more than one body system, so technically anaphylaxis, but not too many that involved major breathing difficulty, etc.)

But I've *never* had a severe reaction cause by tree nuts or peanuts that hasn't involved doing something stupid or ill-informed. i.e. when I was a kid: chocolate M&Ms, potato chips with peanut oil, cracker jack (which, fortunately, I spit out before swallowing).

as a teenager: nutty caramel corn (that one could have cost me my life! how stupid was that. my father gave it to me and my sister and said to check for nuts. . . we took a quick look and deemed it safe.)

also in highschool: one suspected reaction to imported chocolate (I am a bit allergic to chocolate . . . and to soya lecithin. But this reaction was more dramatic than usual so I think it was probably x-contaminated)

I'm 30 now and more vigilant, so I haven't had a reaction to nuts in a very long time. (although I have had some minor reactions which could have been from contact.) But I'm not as likely to run into cross contamination problems because I no longer eat out and can't eat most processed food (multiple food allergies)

[This message has been edited by LisaM (edited August 09, 2006).]

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By DJPorter on Fri, 08-11-06, 02:20

I have always been extremely careful so have had very few exposures in my life, which up until November '05, I thought I could control my environment.

I was visiting my Mother, who had my 5 year old nephew visit a few weeks earlier. My nephew had eaten peanut butter and saltines while there. I ate one of the saltines out of the same bag and immediately started swelling and hives all over my face and, as I always do, shaking all over. After the emergency room trip, we looked at the sleeve of crackers and there was the most minute amount of peanut butter that you could barely see it on the outside of the wrapper. It seems that I probably didn't even ingest any, just the exposure topically was enough to set me off.

My Mother was crying when I got home saying she had never been careful enough my entire life - which was true but also was an entirely different era where nothing was watched quite the way we do with our kids.

Anyway - since that day because it had been so long between being exposed - I've become even more vigilant than ever - I won't go out to eat at all, I never eat chocolate, cookies anything that could have been cross-contaminated, and find myself paranoid of eating anything, even if all the ingredients are listed.

I feel that I've gotten too cautious but I just can't bare to go thru another reaction again - it is just too scary.

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By Precious1971 on Fri, 08-11-06, 02:23

I have to say for the 34 years of my life, I never worried about peanuts nor ever had a reaction to them until I was tested a Class "3" last October.

I say my world was stopped dead in its tracks.

My family thinks I have gone nuts...I have avoided all nuts altogether.

I am due for another skin test next Fri the 18th...I shall see how it has changed since then.

Most of the reactions so far have been red blotches--none of them raised (either bright red or angry red). Most of it went away with the help of Benadryl....nothing past that was needed.

Last week, when I awoke, I had mysterious welts on both legs/behind knees that NEVER changed shapes, colors, or NEVER joined together. (I initially blamed Outback...until I learned that I skipped all allergy meds for nearly three days). Benadryl DID NOT budge these rashes a bit. Zantac (1 pill), and plenty of rubbing alcohol and Aveeno seemed to do the trick.

I tried that again this week, this time, two days without meds...had a minor rash, Benadryl took care of it this time.

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By starlight on Fri, 08-11-06, 02:42

DJPorter, that actually sounds like an ingestion reaction to me. If you (or the cracker) touched the wrapper, then you touched and ate the cracker, that's ingestion.

Also, children are pretty messy. Your nephew could have had his hands all over the cracker you ate, even just in an attempt to get the cracker above it out of the package. [img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img]

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By Adele on Fri, 08-11-06, 11:46

Precious, when I used to get giant hives, they would always start on the inside of my wrists and the back of my knees. Warm part of the body, perhaps?

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By starlight on Fri, 08-11-06, 15:05

Quote:Originally posted by Adele:
[b] Warm part of the body, perhaps?[/b]

The backs of my legs used to break out in massive hives if I sat with my bare legs on a vinyl seat. My dad's old Ford Fairmont (sp?) had them, and so did my mom's old camero, so we put a towel on the seat since I was always in a skirt (school uniform). I also got hives from cold water. Just something to think about, have you been wearing shorts recently and sitting on something new?

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By Precious1971 on Fri, 08-11-06, 15:05

Quote:Originally posted by Adele:
[b]Precious, when I used to get giant hives, they would always start on the inside of my wrists and the back of my knees. Warm part of the body, perhaps?[/b]

Did they change shape, colors, join togehter?

The last hives did not do that this time...that makes me wonder were they hives or not (for me).

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By Precious1971 on Fri, 08-11-06, 17:41

Quote:Originally posted by starlight:
[b] The backs of my legs used to break out in massive hives if I sat with my bare legs on a vinyl seat.[/b]

Now that you say that, I did sit at vinyl booth from two days before at Macaroni Grill. I wore shorts that day.

I also wore new blue jean capris the next day when I went to Outbacks...cannot remember if they had vinyl booths are or not. I normally wash new clothes before wearing but I did not do that either.

Only God knows what I came in contact with.

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By McCobbre on Sat, 08-12-06, 01:21

Quote:Originally posted by starlight:
[b] The backs of my legs used to break out in massive hives if I sat with my bare legs on a vinyl seat. My dad's old Ford Fairmont (sp?) had them, and so did my mom's old camero, so we put a towel on the seat since I was always in a skirt (school uniform).[/b]

I had a soy allergy as a child (apparently not anaphylactic--we never avoided; it was just common knowledge and I didn't go out of my way to eat it--but in the '70s in my part of the world I didn't have as many opportunities as now). Anyway, my father worked for a car company other than Ford. One of our family jokes was that I was allergic to Fords because they used soybean oil in their carseats.

Now, how my family would know this at that point in history, I do not know.

But hmmmmm . . . it's something to think about. There could be something in the vinyl to be allergic to (soy or not).

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My posts may not be published by anyone without getting express written consent by me.

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By DJPorter on Sat, 08-12-06, 11:31

Starlight - As much as I would love to ignore your response, I feel I must respond. Your feeling compelled to take time and write back to me with your opinion on something you have absolutely no details on what occurred and with a response that added no value at all to the topic nor to me is an example of the ignorance and "oh it's not that bad" attitude that people with this deadly allergy go through each day - including school children whose friend's parents are up in arms because their child can't bring peanut butter to school or the airlines not thinking the airborne dust can set someone off.

Your response shows to me that either you don't have anyone in your life with a deadly allergy to peanuts, you are ignorant to the degree to which a reaction can occur or you just have too much time on your hands.

I did not give all the details of the night at my Mother's since the point of the thread was not what type of exposure I had but can you totally eliminate the threat of a reaction from your life if you are extremely careful. And also that such minute amounts can touch off a reaction that this too prevents you from controlling your environment totally.

I have lived with this deadly allergy for the past 47 years beginning with the two times as a toddler I was rushed to the hospital blue from no oxygen before they realized what was the cause. I've had life-threatening reactions from airborne dust at a ballgame when people were shelling and eating peanuts around me, ingestion and yes, to your dismay, topical.

So please in the future when you feel compelled to explain in great detail about something you have no idea the circumstances, please refrain.

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By starlight on Sat, 08-12-06, 16:26

Quote:Originally posted by DJPorter:
[b]Starlight - As much as I would love to ignore your response, I feel I must respond. Your feeling compelled to take time and write back to me with your opinion on something you have absolutely no details on what occurred and with a response that added no value at all to the topic nor to me is an example of the ignorance and "oh it's not that bad" attitude that people with this deadly allergy go through each day - including school children whose friend's parents are up in arms because their child can't bring peanut butter to school or the airlines not thinking the airborne dust can set someone off.

Your response shows to me that either you don't have anyone in your life with a deadly allergy to peanuts, you are ignorant to the degree to which a reaction can occur or you just have too much time on your hands.

I did not give all the details of the night at my Mother's since the point of the thread was not what type of exposure I had but can you totally eliminate the threat of a reaction from your life if you are extremely careful. And also that such minute amounts can touch off a reaction that this too prevents you from controlling your environment totally.

I have lived with this deadly allergy for the past 47 years beginning with the two times as a toddler I was rushed to the hospital blue from no oxygen before they realized what was the cause. I've had life-threatening reactions from airborne dust at a ballgame when people were shelling and eating peanuts around me, ingestion and yes, to your dismay, topical.

So please in the future when you feel compelled to explain in great detail about something you have no idea the circumstances, please refrain.[/b]

Well EXCUSE ME for having the gall to try to ease your mind and care about you, which is what I was trying to do. From the tone of your post, repeating twice about how long it has been since you've had a reaction, I assumed (wrongly) that you were not contact reactive. Why? Because it seems that a great deal of people on this board who are contact/airborne seem to have frequent reactions since other people's actions are out of their control, despite how careful they are. I assumed you posted most of the details of the reaction because you gave your symptoms, the circumstances of how the PB came into the house, your mother's thoughts on the reaction, etc.

I was trying to give you another option for what might have happened in case you had never reacted to contact before, since from your post it seemed you greatly modified your comfort zone based on this reaction. People who are new to the boards (which I assumed you are because your post total is 7), who are new to the allergy, or who are just preoccupied, can sometimes mistake ingestion reactions for contact reactions because they don't realize or they forget that having peanut on the hands then putting the hands in the mouth, nose, or eye constitutes ingestion. If you had never had a contact reaction before, you may have believed your allergy was getting worse when it really wasn't. I thought it might ease your mind to consider it may have been ingestion, because I know it would have eased mine.

I'm surprised to see you consider my four lines to be an explaination in "great detail". Unfortunately, that was just in writing the train of thought that is on my mind every time I leave my house, with every object I touch.

I may have assumed something about a SITUATION that I knew nothing about, but HOW DARE YOU assume all those things about me based on 4 lines. I myself have PA, have had it for over 22 years, and yes, I have almost died from it. I was barely conscious and had stopped breathing after both of my ingestion exposures. I should be dead. I am TERRIFIED that my allergy will progress to contact or airborne reactive. I resent the accusation that I am not sensitive to those who are touch/contact reactive, and I believe there are people on this board who could vouch for that fact. I BOYCOTT companies that do not take a pro-active stance with food allergies, like certain airlines or venues. I WRITE LETTERS to companies to protest the addition of new products with peanuts EVEN THOUGH I don't react to traces and I would still be able to eat their products. I take EVERY CHANCE I GET to give people here some hope about the allergy, and sometimes it comes in the form of classifying a reaction or identifying the source of what caused a reaction so they can learn from it and move on. And I am willing, when the time comes and trials begin on adults, to RISK MY LIFE trying to help people find a cure for this damn thing.

I was really happy on this board because it was very rare that people made personal attacks. We all have different opinions, different comfort zones, and we all seem to value other people's imputs. When we argue here, we argue with knowledge, with facts, with opinions, and about the way people phrased things. But the regulars here never slander other people, which is what you've done by calling me ignorant and comparing me to the assholes who would have us all die rather than give up their peanuts. This has made me angry and I feel very bad and I choose not to waste my time on sites that make me feel this way. Fortunately, I will be losing my internet connection in two weeks so I don't have to make this choice, because I really care about most of the people on this site.

[This message has been edited by starlight (edited August 12, 2006).]

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By DJPorter on Sat, 08-12-06, 20:56

.

[This message has been edited by DJPorter (edited August 12, 2006).]

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By Adele on Sat, 08-12-06, 21:36

Quote:Originally posted by starlight:
[b] I was really happy on this board because it was very rare that people made personal attacks. We all have different opinions, different comfort zones, and we all seem to value other people's imputs.
[/b]

Starlight, I value your input and would miss your posts.
The positives we all get from PA.com by far ouweigh the negatives.

Adele

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By joeybeth on Sat, 08-12-06, 21:38

i think starlight was just trying to say that it appeared you might have ingested, unknowingly, some of the pb on the outside of the sleeve OR some that was on the cracker OR that you may have gotten the pb on your hand and then touched your hand to your mouth (which would make it an ingestion reaction). i don't believe she meant anything rude by it at all.

as long as i've been here, i have never noticed her be ugly to anyone. i think it's so hard to read "tone" in posts. i myself have gotten upset before by things that only seemed to me, at first, to be rude. in looking back, i realized it was nothing personal and usually just the way in which i read the post. not to say that it doesn't happen here...because it does...but i don't think starlight is ever involved.

i think this was a big misunderstanding. sorry...my daughter says i'm trying to "mediate" this....but i felt compelled because i really think this is one of those times when two nice people have collided accidentally.

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By LisaM on Sat, 08-12-06, 23:10

Yes, I don't see anything offensive in starlight's comments . . . she was just making a suggestion based on the info. posted which is the best any of us can do on message boards. But I do understand how it can be difficult if one feels that people are not taking the possibility of an airborne/contact reaction seriously (which, I hasten to add, I don't think was happening here.)

starlight, regarding your post about hives and vinyl---my youngest sister has the same problem with vinyl and with plastic especially in hot weather. She gets hives and eczema. My mom didn't really want her wearing shorts to school when she was a kid because her legs would be a mess (plastic desk seats).
She can't even use non-latex dish gloves!

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By McCobbre on Sat, 08-12-06, 23:27

I would add that on this board we help each other--and that often means offering up other possibilities, our own experiences, even conjecture at times.

I've been grateful for this safe place for differing opinions.

I had a similar experience in January after an ana reaction to shellfish (DS is PA, and that's why I'm here). My symptoms are very strange because they're GI only but begin with spaciness--the entire reaction could be mistaken for a virus. And when I posted it, some folks even suggested that as a possibility. I knew it to be a reaction--the Epi worked (and the thing lasted for 4 days with growing symptoms). But I knew these people and knew they weren't doubting me but rather trying to help me work through things. I've gotten to know them and so knew they weren't suggesting I didn't know what I was talking about.

And as we all try to understand anaphylaxis, I think we seek to work through different possibilities so that we can be better prepared next time we're faced with it. The one who suggested I might have had a virus was no doubt wondering whether her DD could have the same kind of reaction--no hives, no swollen throat---nothing telltale about it--and whether they'd recognize it for what it was. Heck--I do that every time I react.

I didn't see any mean spiritedness in the post, but it is difficult to get tone in this kind of communication.

To be truthful, when I read your post I thought that there was a possibility of ingestion. I don't know that either touch or ingestion could be ruled out. I just know it must have been very scary--and your posting it is a good reminder to all of us of how careful we have to be.

I do hope everyone stays! We need you and your voice and your experience.

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By starlight on Sun, 08-13-06, 04:12

Thank you guys for your nice words.

And I'm sorry I've had a part in hijacking your post Adele.

LisaM, I was very fortunate that our school had metal seats for the desks, given the uniform skirt. I can't imagine how horrible it would have been if they had been plastic or those vinyl-covered padded seats. Your poor sister! I wonder if McCobbre is on to something, maybe a chemical used in plastics that reacts with the sweat, combined with the lack of air circulation and the predispostion for eczema?

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By LisaM on Sun, 08-13-06, 13:29

I do suspect that you and McCobbre are right on that. A friend I was talking to the other day told me about someone who broke out in hives every time she touched symthetic surfaces . . . I don't know if it was *all* synthetic surfaces or just some . . but she was living in res and reacted to the kitchen table and chairs and her desk.

Yep, my sister had a tough time of it . . . and her eczema was totally out of control---her fingers would always be swollen and oozing, and she even had eczema on her face. Kids were so cruel--it got to the point in junior high where she sometimes wouldn't want to leave the house to go for a walk around the neighbourhood because she was afraid she'd see someone she knew. (but she did end up getting a paper route so it wasn't like she *totally* avoided going out)

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By krasota on Sun, 08-13-06, 18:39

Vinyl car seats + bare legs = heat rash. That's all it ever was in our family. That's why we had seat covers. It can be really *nasty* heat rash, but heat rash it was and is and evermore shall be.

ygg

__________________

[b]?You open Your hand and satisfy the desire of every living thing.?[/b]

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